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On a personal note: Celebrity chef joins MSA cause

This is not related to health IT, so if that’s all you’re looking for, I won’t be offended if you skip this post—unless you’re involved in wearable sensors, in which case, there’s something near the end that may be of interest.

No, this post is about multiple system atrophy, the rare, progressive, always-fatal neurodegenerative disorder that killed my father in 2012. While my dad was fighting this evil disease, more than a few physicians he saw had either never heard of MSA or had never seen a case of it. One marked it down in the medical record as “MS,” as in multiple sclerosis, a completely different condition.

Recently, MSA awareness got a shot in the arm in the form of some bittersweet news: Las Vegas-based celebrity chef Kerry Simon, who has been called the “rock n’ roll chef” by Rolling Stone magazine and probably is best known nationally for beating Cat Cora on “Iron Chef America” in 2005, told the world he had this illness. He went public in December in an interview with his friend Robin Leach — yes, that Robin Leach.

Rather than go into seclusion as his body starts to wither away, Simon has chosen to become the public face of the disease. He just started a new organization called Fight MSA, and has a high-profile fundraisers planned Thursday in Las Vegas. Simon is friends with a lot of rock stars, and these are big-dollar events with big names, including entertainment from Sammy Hagar, Slash, Alice Cooper and Vince Neil of Motley Crue, and food by a long roster of famous chefs from around the country. If you can make it, tickets are still available.

The same night, his restaurant in his home town of Chicago, Chuck’s: A Kerry Simon Kitchen, is holding a smaller benefit. It just so happens that I’m returning from the HIMSS conference in Orlando, Fla., that evening, flying into Midway Airport. Chuck’s is at 224 N. Michigan Ave., in the Hard Rock Hotel, which is right on the way home for me from Midway. If all goes well, I plan on being there around 8 pm, and I invite you to join me. Unlike the $500/$1,000 Vegas event, the Chicago fundraiser will only set you back the cost of a hamburger or a cocktail.

(If you happen to find yourself at one of Simon’s restaurants in Las Vegas, Chicago, Los Angeles, Atlantic City, N.J., or Punta Cana, Dominican Republic, please put in a good word about his fight against MSA.)

I’ve been trying to sell this story to national and local mainstream and foodie media, so far, to no avail, so I’m posting it here. If you have any leads for me, please let me know.

Also on the MSA front, perhaps the foremost researcher of this disease in the world, Dr. Gregor Wenning of the Medical University of Innbruck, Austria, last year published the first medical textbook dedicated to understanding MSA. Wenning just flew 18 hours each way to meet with Simon. If you’re a neurologist or other physician treating MSA patients, you can buy a copy here.

Just last week, the U.S. Food and Drug Administration approved a drug called Northera (droxidopa) for treatment of neurogenic orthostatic hypotension (NOH), a sudden drop in blood pressure when standing up that occasionally is a symptom of MSA, Parkinson’s disease, pure autonomic failure and even diabetic neuropathy. My dad had at least a couple of fainting spells due to NOH.

This summer, I am planning a huge undertaking to raise awareness this summer, a bike tour from Chicago to Washington, D.C. My dad lived in the area, and there just happens to be an MSA-related conference there in July that I may use as my finish line. That’s 800 miles, for those of you keeping score at home, and I think I can do it in less than two weeks. There may be an opportunity to ride a segment or two with me as well, particularly the final leg through Maryland. I expect to have some details to announce during March, which happens to be MSA Awareness Month.

I will be putting up a separate blog soon to share details of my tour and, hopefully, updates en route. (You know, quantified self folks, I might be able to make use of some of your technology if I’m going to be on a bike for 6-8 hours a day for 10-14 days. Just saying.)

For more information about the disease and the research underway, I’ll refer you to the Multiple System Atrophy Coalition in the U.S. and Canada, and the Multiple System Atrophy Trust in the U.K. There are support groups in other countries, and I’m happy to help you track them down if you ask.

February 21, 2014 I Written By

I'm a freelance healthcare journalist, specializing in health IT, mobile health, healthcare quality, hospital/physician practice management and healthcare finance.

OpenNotes, changing roles in health IT and a Friday, um, funny

I’ve just had two new stories published on the US News & World Report Hospital of Tomorrow site: “OpenNotes Helps Keep Patients Informed and Engaged” and “The Evolution of Health IT Continues.” The latter is subtitled, “New roles signal new realities and priorities as hospital information technology changes,” and goes in depth and the changes underway in hospital HIS and HIM departments in response to various healthcare reform imperatives. I’d appreciate your feedback here, on the U.S. News pages and on Twitter.

Since it’s Friday, I’ll share something offbeat. I’ll let you decide if it’s a good idea or a gimmick. Nestlé Fitness has created the “Tweeting Bra,” with a Bluetooth-enabled sensor that sends a tweet every time the wearer unhooks the undergarment, reminding women daily of the importance of breast self-exams. Here’s a video, in Greek with English subtitles.

 

If you want more information, here’s a short interview with the keeper of the Tweeting Bra, Maria Bakodimus, a Greek celebrity. It’s only in Greek, without subtitles, but it does show the sensors in more detail.

If you want to get one, well, sorry.

 


It was a one-off prototype created for Breast Cancer Awareness Month in October.

February 7, 2014 I Written By

I'm a freelance healthcare journalist, specializing in health IT, mobile health, healthcare quality, hospital/physician practice management and healthcare finance.

‘Dilbert’ takes on wireless health

Perhaps I’m getting loopy, or just distracted, but I’ve been reading the funnies again. (Hey, we all need a laugh from time to time, right?) But here goes my second consecutive post involving  a comic strip, this time a certain one called “Dilbert.” Today, Scott Adams, who spoke at HIMSS in 2005, addresses digital health, specifically wearable sensors and how unscrupulous employers like Dilbert’s pointy-haired boss might exploit all the new health data being generated.

Dilbert, ©2013 Scott Adams

All of our bosses can’t be so intrusive, can they?

 

August 15, 2013 I Written By

I'm a freelance healthcare journalist, specializing in health IT, mobile health, healthcare quality, hospital/physician practice management and healthcare finance.

Health Wonk Review: money talks, but IT helps

The latest edition of Health Wonk Review is hot off the digital presses, with Joe Paduda taking hosting duties on his Managed Care Matters blog. And managed care does matter in this trip around the health blogosphere, with most of the attention on healthcare costs and insurance coverage.

On the quality front, which is my primary interest these days, there is some interesting discussion about  whether the new Medicare hospital readmissions policy truly will produce better care or will prod some into providing the minimum level of service to readmitted patients.

(Frankly, hospitals have been overtreating for years. If a minimal level of service gets the job done for the patient, that’s a good thing. And the policy is supposed to cause hospitals to do the right thing in the first place, knowing that they will lose out later if they don’t. I’m all for that.)

My post on consumer ignorance of telemedicine is in there, as is a good one from Vince Kuraitis and Leslie Kelly Hall about the duty providers have to share information with patients. EHRs and wearable sensors also make this edition of HWR. Not bad from an IT perspective.

May 10, 2013 I Written By

I'm a freelance healthcare journalist, specializing in health IT, mobile health, healthcare quality, hospital/physician practice management and healthcare finance.